Paul K. Longmore Institute on Disability - disability rights

An Ode to the Service Dog: A Talk with Sonja Ohldag

Visitor — Thu, 02 Nov 2017 22:33:07 +0000

Leading up to Superfest 2017, Superfest intern Celina Gomez spoke with Sonja Ohldag about her film Chief. To follow the film on Facebook, visit: https://www.facebook.com/sohldag/posts/355631324847145

Celina Garcia: Chief is comprised of both still imagery and home-video style footage. At what point did you decide you wanted to fashion them into a documentary, and how did this dictate the type of footage you then captured?

Sonja Ohldag: I’ve captured most his training moments on camera. Taping and photographing for me is training diary, progress reports, it gives me feedback on things I could do better in order to improve chief’s progress and mine. The videos help me to determine how well we’re doing in our training schedule. People often times don’t know that legit Owner/Trainers follow individualized task schedules and have a system, which is geared toward their teaching pace and skills, and the dogs’ learning and progressing pace and skill levels. Service dog training for different kinds of disabilities require different types of training. As an Owner/Trainer, we have to discipline ourselves every single day to stay on track. That’s not always easy, but the picture material helps me to stay on track and provide consistency for Chief and myself. I like to have a journal, for mainly me, but also for others to see and experience what goes into service dog training.

Lots of Owner/Trainers have benefitted from the videos and wonderful conversations have come out of it. Those videos and photo material have helped me to resolve access challenges, too. Chief’s movie only shows fragments of it and I wish we could have put every single photo and video into it, but that would be almost 6 years of material. In short - the photos and videos, are for proof of training, self-evaluation and interaction with other Owner/Trainers and of course, for memories. I’ve always wanted to write a book about Jolanda, the dog I worked with before Chief. She was the book kind of dog. But Chief loves the camera and he loves to pose and I knew from day one that he needed to be on screen. People love seeing his photos and videos, which made the final decision easy.

CG: Prior to making Chief, what types of films or stories had you seen where you felt they properly reflected life with a service dog? What sort of influences did you draw inspiration from, or did you feel there was a gap in representation?

SO: Yes, there’s clearly a gap in representation and often times misrepresentation or underrepresentation. Often times people think it’s more than enough to always want to hang out with their dog to turn their pets into service animals, but that’s not how it works. Owner/Trainers are hardly ever mentioned in a positive light, which I find heartbreaking, but somewhat understandable since we have no representative who would promote us in public or share our stories, nor do we have the funds to do it ourselves. Lots of us have social media pages in which we try to help people access our world. Many people with disabilities literally put their lives on hold and spend lots and lots of hours and money on training their own dogs. We meet up for training and exchange tips, we help each other, we travel far for meetups and have to make all the phone calls ourselves. No one finds us “interesting” enough to follow us around… We have to organize those things and it’s really exhausting, but rewarding. We’re all dealing with daily struggles and the amount of effort and team work it takes can’t be put in words.

I want for people to hear the good things about us. I want for people to see and understand that we’re out there, our dogs are incredible, and they’re highly trained and carefully chosen, and how it isn’t easy to train your own dog while you’re the one who needs the dog’s help. I also want them to see this process, and how owning a service dog is a lifelong responsibility and takes continuous training. My inspiration is my life and the dogs I’ve worked with and people who surround me. It’s such a beautiful feeling when someone truly “sees” your dog and immediately says - wow, what a cool dog you have. I can tell it’s a well-trained service dog. Those are the people I’m grateful for every single day. It’s such a good situation when people ask sincere questions about Chief or training. We’re always happy to explain and educate and people even get to say hi to him when they are respectful and interested. Luckily Chief is perceived very well and people naturally feel drawn to him.

CG: What kinds of obstacles did you encounter as a first-time filmmaker?

SO: Oy...nothing major. Amir Jaffer generously donated his time and knowledge to make this film happen. It’s was a really amazing process. He was not familiar with owner training initially, so we spent lots of time talking about service animals and training. Many conversations were personal and of course, some subjects were emotional and challenging. But we took our time and worked our way through it. I think the process was an incredible experience. We had a few logistical challenges in regards to finding days to film and do the interviews since we both travel frequently. Some days we met up with other Owner/Trainers and we had to find dates to get us all together. Sometimes I just simply had a hard time finding the right words or was dealing with personal issues. When you live with a disability, the illness doesn’t necessarily define everything you do, but it does influence your days. But other than that, it was a really awesome experience, and I can’t thank Amir enough for being so reliable and for helping me turn my thoughts into an actual film. I can be challenging to work with at times, but he was steady and kept us on track.

CG: In a short amount of time, your film captures a variety of issues. Why do you think film is an important medium in spreading awareness on not only service dogs but also highlighting living with an invisible disability?

SO: Watching or hearing something is oftentimes easier for people to access. It’s less “time consuming” and people are more willing to watch a short movie rather than hear someone talk or read pamphlets or books, plus I find it more personal. I love all media such as books and film and audio. I’ve shown Chief’s movie many times during educational events and people respond with different emotions. Some people were speechless, others cried, many were happy and sincerely appreciated it. They feel connected to Chief and myself, which immediately offers a great baseline for any kind of conversation and discussions. Invisible disabilities are things people don’t like to talk about. There’s still a lot of stigma attached and people often times are judged. I’m at a point where I’m completely open about my disability and feel comfortable sharing when people ask. Chief is such an amazing little guy, he makes me look special. But it’s all him. Chiefie’s movie helps people connect and understand on a cognitive and emotional level. It touches them. I’m glad it does.

CG: Do you feel there’s been an increased skepticism towards guide/service dogs? What do you hope resonates with audiences after viewing your film?

SO: I could go on and on about politics and schools vs Owner/Trainers, and about people thinking they know it all, and all those “specialists” out there who think they’re totally rad.... I don’t think people are “more” skeptical toward service animals, but due to lots of propaganda and the media reporting all the bad things, people now think they know “all about it,” and they are now confronted with things more than they used to be. Not too many years ago any kind of service animal was rather a rarity. Today, more people do have legit service animals and they’ve become more public.

Unfortunately, most people don’t know how to tell a legit working dog from a pet in a harness or vest. There’s lots of stuff going through the media, but hardly any sincere service animal education. Often times people can’t tell a well-trained dog from a training school or from an Owner/Trainer from a poorly trained one. There are poorly trained legit service animals as much as there are amazingly well-trained ones. They don’t know how to look for behavior, connection between handler and dog, synchronicity, etc… What makes me really unhappy is how businesses often times make no effort to keep people with disabilities and their dogs safe. They are poorly informed about existing laws.

CG: What questions can a covered entity's employees ask to determine if a dog is a service animal?

SO: In situations where it is not obvious that the dog is a service animal, staff may ask only two specific questions: (1) is the dog a service animal required because of a disability? And (2) what work or task has the dog been trained to perform? Staff are not allowed to request any documentation for the dog, require that the dog demonstrate its task, or inquire about the nature of the person's disability. Someone with a legit dog, who has had proper training should, for their own protection, make no fuss and respond accordingly. Businesses need to take responsibility so others can see that the “service dog business” is a serious one and that lives depend on it. Skepticism often times comes from being uninformed or feeling helpless and results in accidental or purposeful discrimination. I like to give people a hand and help them understand. It’s not easy, and it is very exhausting, but it’s worth all the encounters we had.

CG: Finally, what do you look forward to being a part of Superfest?

SO: I’m just so so honored that Chief’s movie was selected for this specific festival - it means the world to me. Can’t wait for the festival to start. My best friend from Germany is flying in to be there for us. It’s just amazing. Looking forward to all the things :)

*This interview has been edited and condensed for clarity.

Tags:

chief

disability

disability rights

discrimination

Superfest: International Disability Film Festival

“Save Changes”: Telling Stories of Disability Protest (via Nursing Clio blog)

Visitor — Wed, 05 Apr 2017 18:06:21 +0000

This is a cross-post from the Nursing Clio blog originally posted here.

By: Catherine Kudlick

At first, it was a simple case of “if you can’t beat ‘em, join ‘em,” as I worked with WikiEducation Foundation to teach a methods course in which students created disability history content. But the more I learned, the more it became clear that we were engaging in multiple forms of protest, especially once I began working on my own contribution.

My past warnings to students not to rely on content created by the crowd were perhaps a vestige of anxieties that had led authorities to suppress Wikipedia’s precursor, L’Encyclopédie in the decades leading up to the French Revolution. Its impresario, the Enlightenment thinker Denis Diderot, had already been imprisoned for challenging established knowledge.

Diderot would have been pleased by Wikipedia’s mission, “to bring about a world in which every single human being can freely share in the sum of all knowledge,” at the same time that he would recognize its flaws. Most editors are young white men who, consciously or unconsciously, ignore those on the margins. And Wikipedia’s “notability” requirement (“significant coverage in reliable sources that are independent of the subject”) inherently favors information from establishment sources. Such rules reinforce existing ideas about which topics merit coverage.

My class faced real challenges. First there’s a daunting set of Wikipedia codes and hierarchies. And I was surprised to discover that even a generation weaned on social media fretted about public feedback from strangers.

Then there was the focus on disability history. A field that began to coalesce around 2000, it seeks to expand thinking about a group that makes up nearly one fifth of the US population today. Unfortunately, a prevailing belief that disability is a static biological condition prevents most from understanding it as something shaped by society and culture much like race, gender, class, and sexual identity. At the beginning of my disability history courses, I tell students that they’re on the cutting edge of history, much like those a generation ago who learned about women’s history and the history of African Americans.

I told this class that they were making history by writing it.

Pointing out that history has a history, I invited them to consider how putting a group in context can combat prejudice and stigma. An entry that tells the story of your people on the world’s seventh most visited website can’t help but catapult you from being an individual struggling alone to being part of something far bigger. With belonging comes a sense of pride, a sense of having something to contribute.

Learning along with my class, I wrote an article on the longest nonviolent occupation of a federal building in US history, the “Section 504 protest” in April 1977. Through an exhibit called “Patient No More: People with Disabilities Securing Civil Rights,” I’d helped bring this little-known disability Stonewall to life. The successful month-long occupation by over one hundred disabled people and their allies would pave the way for the Americans with Disabilities Act (ADA).

HEW employee Bruce Lee posted a sign, reading “504 is law now make it reality,” in his office supporting Section 504 during the protest. (Photograph by HolLynn D’Lil)

Four years before the protests, congressional staffers had slipped anti-discrimination language from the Civil Rights Act of 1964 into a vocational rehabilitation bill that was up for reauthorization. This countered views of “the disabled” as pitiful wards of charity. Rights included making public spaces accessible to people in wheelchairs and mainstream education open to qualified students with disabilities. This “Section 504” applied to nearly all public spaces, including government offices, universities, schools, hospitals, and transportation systems.

Disability activists understood 504 as their bill of rights that still needed one signature from the Secretary of the Department of Health, Education, and Welfare (HEW) in order to be put into effect. Worried about costs, officials from the Nixon, Ford, and the newly-elected Carter administrations had stalled. After four years of trying every legal channel, activists snapped. On April 5, 1977 people with disabilities took to the streets in cities with regional HEW offices. Almost everywhere protests were either cut off or fizzled.

In San Francisco things were different. With little warning, over 100 people streamed into the Federal Building and refused to leave for nearly a month.

504 protesters occupied the HEW offices at 50 United Nations Plaza, making them the headquarters of the “Section 504 Emergency Coalition.” (Photograph by HolLynn D’Lil)

The protests succeeded in part because of the Bay Area’s unique climate. Since the 1960s disabled people had been drawn to the rich mosaic of minorities who challenged the status quo: gay men and lesbians, students, artists, and practitioners of new religions, all that included people with disabilities. Decent weather made it easier to participate in antiwar protests, civil rights demonstrations, and the Free Speech Movement gathering momentum at UC Berkeley. In this electrifying environment disabled individuals came to think of themselves as people with rights, while putting them in touch with potential supporters.

The 504 occupation also succeeded because savvy organizers, including Kitty Cone, Judy Heumann, and others, had spent years cultivating relationships and building coalitions. In addition to galvanizing disabled people themselves, they had educated politicians. Mayor George Moscone helped with portable showers while Congressmen Phil Burton and George Miller had the 4th floor of the federal building declared a temporary “satellite office of congress,” a theatrical stunt that allowed them to hold a public hearing about the protesters’ concerns to garner media attention. City officials allowed hundreds of people to gather each day on Civic Center Plaza below to cheer on the occupiers.

The protest also enjoyed wide support from local community groups. In line with its popular food programs, the Black Panther Party brought in hot meals for all 100+ occupiers, including BPP members Brad Lomax and his attendant Chuck Jackson.

Protesters gathered in front of City Hall in support of the 504 occupiers. (Photograph by HolLynn D’Lil)

And the disabled people inside risked their jobs and even their lives to be there. Amidst office furniture, people from different races, social classes, and with a variety of disabilities and their allies created a makeshift society. Some were seasoned protesters while others had never slept away from home before. Spending so many hours together forged cross-disability coalitions rooted in true interdependence — such as when someone who couldn’t speak could dial a phone so that someone without use of her hands could make a call. Just like in any community, there was bickering and intrigue and romance, but here there was also a sense of purpose and a political awakening.

I teared up as I hit the “save changes” that would make this story public on Wikipedia for the first time, knowing a hard-fought victory was now part of electronic history and of course up for grabs.

But how permanent is it? Even before the November 8 election ushered in an era ever more hostile to minority rights, I sensed something like 504 would now be hard to pull off. Everyone is on guard, literally and figuratively, in a national climate of building walls rather than alliances.

I imagined my students hitting “save changes” buttons of their own. Future activism will likely be about occupying virtual spaces and other tactics we can’t yet imagine. History inspires us and the next generations to take heart that the seemingly most disenfranchised can — in the words of 504’s Kitty Cone — “wage a struggle at the highest levels of power and win.”

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An Interview with Upcoming Superfest Filmmaker: Jordan Melograna

Visitor — Fri, 09 Sep 2016 22:02:11 +0000

Continuing our series of interviews with the filmmakers of Superfest 2016, Grad Assistant Alex Locust spoke with Jordan Melograna, director and producer of The Right to be Rescued. A short documentary about the impact of natural disasters on people with disabilities, The Right to be Rescued tells the story of those disabled people left behind in Hurricane Katrina and what New Orleans and other cities are doing to make sure it never happens again. For more information about the film, visit the Rooted in Rights website. The Right to be Rescued screens at Superfest on Sunday, October 23rd at the Contemporary Jewish Museum in downtown San Francisco. You can buy your tickets to Superfest now at: superfestfilm.com/tickets/

Alex Locust: What inspired you to get into filmmaking?

Jordan Melograna: I’m a child of the 80's and grew up on Spielberg, so my interest in film began with science fiction, action, and popcorn movies. Later, watching The Thin Blue Line, Grizzly Man, Sherman’s March, and other documentaries convinced me that this genre was a better fit. My first real job on a documentary was on The Powerbroker, a TV documentary about civil rights leader Whitney Young, which sparked an interest specifically in human rights related subject matter. Part of my interest in the Right to be Rescued was inspired by Spike Lee’s When the Levees Broke. When I saw Lives Worth Living, I became aware of an entire civil rights movement largely overlooked in history books and it remains an inspiration for the work I do at Rooted in Rights.

AL: At the core of your organization, Rooted in Rights, is the desire to make films about important disability issues. Why do you think film is an important medium for promoting disability rights?

JM: Film is perhaps the most important medium for promoting the cause of disability rights. First and foremost, because it is both a visual and audial experience, it can be far more accessible than other forms of communication. In the U.S., we have a long history of hiding, separating, and segregating people with disabilities, whether in institutions, workshops, the special ed classroom or, increasingly, in our jails and prison. A camera can go behind those walls and remove the separation. And lastly, filmmaking is no longer restricted to filmmakers. Every person has the potential to make a film with the smartphone or tablet they probably already own. At Rooted in Rights, we believe strongly in providing the space for people with disabilities to tell their own stories, and they are stories that the rest of the population is unlikely to have heard before.

AL: How do you select your topics, and can you tell me about how you decided to do something on Hurricane Katrina?

JM: Rooted in Rights produces new videos almost every week, from short 1 min videos to short documentaries like The Right to be Rescued. We generate ideas for videos largely by listening to the disability community. There are many great bloggers and advocates who are doing great work across the world. We see our role as amplifying their messages and communicating their work to larger audiences. So we team up with Protection and Advocacy systems (P&As), Independent Living Centers (CILs), and other grassroots groups. For this film, we knew that the 10th anniversary of Hurricane Katrina was approaching, and we felt that it was unlikely that retrospectives on the event would focus on people with disabilities. We wanted to tell those stories, and through telling them, encourage other cities to revise their emergency preparedness plans so what happened in New Orleans doesn’t happen again.

AL: In light of the recent violent tragedies in San Bernardino, CA and Sagamihara, Japan, what is your sense of the public perception around the disabled lives? Do you think that people outside of the disability community are making the changes needed to prepare for these acts?

JM: In a word, no. We were horrified by both of those events, but they are just the most famous incidents. There are other examples of people with disabilities being abused and killed by others who didn’t think their lives have value, even including parents and caregivers. And there are those who suffer the consequences of non-inclusive planning, like many in New Orleans. Fortunately, activists with disabilities are responding. They are pushing back aggressively with the message that having a disability does not mean being miserable. The recent protests against the film Me Before You are just one example of this. At Rooted in Rights, one of our digital storytellers made a video specifically addressing the Sagamihara incident. Storytelling is a great way to can change the public’s thinking, and hopefully, their actions.

AL: This film features a diversity of people sharing their stories of surviving Hurricane Katrina. Can you speak to your process of identifying a diverse group and how the intersectionality of identities played into that selection process?

JM: I should start by saying that people in New Orleans and the Gulf Coast in general are weary of talking about the storm, and the bad memories it brings up, and I’m forever in debt to those who chose to share their stories in the film. New Orleans to me is one of, if not the most dynamic, eclectic cities in the country, and I felt the stories should reflect that. So the way I think about intersectionality is really about authenticity. To authentically tell this story without people with disabilities who are immigrants, African-American, or from poor communities is impossible because those identifies are part and parcel to the city. In a wider sense, the disability community is not monolithic. To authentically tell the stories from that community, you have to tell stories that intersect with issues of race, gender, sexual identify or income.

AL: What has the reception of the film been like thus far?

JM:The most important reaction so far has been from FEMA itself. A day after the film was released online, it was shown at an event hosted by Portlight Strategies, an organization that works exclusively on emergency preparedness and disabilities. Many in attendance worked at FEMA. And we’ve seen that agency and the Red Cross begin to take these issues much more seriously. We've talked to Portlight about including the film as part of a curriculum for disaster management degree programs. The film has since been shown in cities around the country, and we’ve had requests from as far away as Warsaw and Barcelona. We want anyone who sees it to feel like they can use the film as a conversation starter, and as a way to show the potential deadly consequences of not planning inclusively.

AL: What do you want audiences to leave Right to Be Rescued with?

JM: I would like audience members to feel empowered to change the way emergency planners work and think in their own communities.

AL: Do you have any recommendations for people with disabilities who may leave this film feeling overwhelmed or inspired to make change but unsure where to start?

JM: All disasters are local, so start small. Contact your city council or local Red Cross and ask directly how they plan for the needs of people with disabilities. If you don’t like the answer, get organized. Call your state’s P&A or CILs and tell them what’s going on. The time to plan for the next disaster is right now.

AL: What does being a part of Superfest mean to you as a filmmaker?

JM: It is an enormous honor for The Right to be Rescued to screen at Superfest. Your commitment to films specifically about the issues important to our community and your insistence on screening the films in the most accessible way possible couldn’t be more aligned with our values. We hope that the festival is a place where we can connect to other advocates and continue to push for inclusive emergency plans that save lives.

Buy your tickets to Superfest to see The Right to be Rescued and more great films!

Tags:

disability rights

emergency preparedness

Jordan Melograna

Rooted in Rights

Superfest 2016

Superfest: International Disability Film Festival

Uncategorized

Subversive Access: Disability History Goes Public in the United States

Visitor — Tue, 24 May 2016 18:28:11 +0000

Disability History is taking off in Western Europe, as evidenced by the Public Disability History Blog started in January 2016 that has already surpassed 10,000 visitors. In the guest blog shared below, Catherine Kudlick joins the conversation by introducing the “Patient No More” exhibit.

In summer 2015, the Paul K. Longmore Institute on Disability at San Francisco State University mounted an interactive, multi-media exhibit “Patient No More: People with Disabilities Securing Civil Rights". We faced several daunting challenges that ultimately made our installation like no other. In fact, we have been sharing our process with museum professionals and continue to learn as we go. 1977 disability protests in San Francisco. Photographed by Anthony Tusler

First, the story itself: on April 5, 1977, more than 100 Americans with and without disabilities began a twenty-six day occupation of San Francisco’s Federal Building to insist on getting civil rights. Four years earlier, Section 504 of the Rehabilitation Act of 1973 made it illegal for any facilities or programs funded by the national government to discriminate against disabled people. One official’s signature stood in the way of the law taking effect. After four years of waiting, a coalition made up people with different disabilities launched protests across the country. San Francisco’s occupation proved the most involved and successful. In fact, thanks to support from local community groups like the Black Panther Party, Glide Memorial Church, the Gay Men’s Butterfly Brigade, as well as local and national politicians, it remains the longest unarmed take-over of a federal building in US history. The occupation itself and subsequent victory gave birth to a national disability rights movement and helped pave the way for passing Americans with Disabilities Act (ADA) thirteen years later in 1990.

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"I'm #PatientNoMore" Bullhorn Shouts, Installment 3

Visitor — Wed, 16 Dec 2015 19:20:40 +0000

The Longmore Institute’s “Patient No More” exhibit celebrates the accomplishments that the disability rights movement has achieved, but we are also eager to draw attention to the ongoing social justice work that is still being fought for. We ask attendees to the Patient No More exhibit to shout their chants into a bullhorn, recording the audio. Here’s the third batch of chants we’ve received…check back on our blog for more to come!

[youtube https://www.youtube.com/watch?v=yRCspMIM1qI]

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"I'm #PatientNoMore": Installment 1

Visitor — Tue, 08 Sep 2015 21:19:01 +0000

The Longmore Institute's "Patient No More" exhibit celebrates the accomplishments that the disability rights movement has achieved, but we are also eager to draw attention to the ongoing social justice work that is still being fought for. We ask attendees to the Patient No More exhibit to shout their chants into a bullhorn, recording the audio. Here's the first batch of chants we've received...check back on our blog for more to come!

https://youtu.be/yk9h9Knr_S4

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What Would You Have Done? Missing Kitty Cone (1944-2015)

Visitor — Sat, 25 Apr 2015 18:35:38 +0000

By: Catherine Kudlick

[Note: this Sunday, April 26, 2PM at the Ed Roberts Campus above Ashby BART, Bay Area people with disabilities and allies will gather to honor the life of a woman who history will one day credit with changing US history. Kitty Cone, along with Judy Heumann, was one of the key organizers behind the events that we’ll be portraying on our upcoming exhibit to commemorate the 25th anniversary of the Americans with Disabilities Act (ADA) in July. In the post below I trace her unlikely impact on me.]

As we reach the final stretch for launching our exhibit “Patient No More: People with Disabilities Securing Civil Rights” that opens at the Ed Roberts Campus in July, I’ve been consumed with a burning question: what would I have done? Would I have gone in to occupy a federal building for 26 days with over one hundred people I didn’t know, disabled people? Could I then or now sleep on the floor, bathe in a sink, eat food brought by strangers, live with crabs and who knows what else, for nearly a month? Would I have resisted the siren song of friends and family, clueless about disability politics as they gently mocked me about a cause I didn’t yet know enough about to believe in?

Kitty Cone, who to everyone’s great sadness died on March 21, was a central figure in the Section 504 Occupation of San Francisco’s Federal Building back in April 1977. She understood the deep connections between personal activism and political change. She could explain in basic ways how individual people could make a difference by insisting that President Jimmy Carter’s administration come through on a promise they’d made to sign legislation that had been languishing for four years, Section 504 of the 1973 Rehabilitation Act that would guarantee people with disabilities their civil rights. And she knew how to build bridges between various local community groups and leaders who could support the protesters inside. Her persuasiveness and carefully-crafted alliances helped ensure the success of 504 and ultimately helped pave the way for passing the Americans with Disabilities Act (ADA) in 1990.

In April 1977 I was an awkward kid in college at UC Santa Cruz, excited about my upcoming junior year abroad in France. I didn’t know any other disabled people, because I didn’t want to. My community was friends from my dorm. We had in-jokes and talked late into the night about our classes, our professors, our families, each other, the crappy dining hall food, our hopes for the future. I’d like to think of myself as political, but I wasn’t. I was just an insecure gal looking for myself and hoping people would like me or at least not taunt me like they had for most of my life about my “weird eyes.” I didn’t know to think of what we today call “bullying” as political, as part of a bigger civil rights struggle.

Given how much time I spent secluded in my dorm room struggling to read the small print in my books for class as I hid (from) my vision impairment, little wonder that I had no idea that a revolution was taking place just 75 miles away up in San Francisco.

What if I’d met Kitty back then? Many of the people we have interviewed for “Patient No More” described her as the one who urged them in and gave them strength. Her activism extended far beyond strategizing a revolution of disabled people: there was something deeper, something about her that made you feel part of something bigger, gave you a sense of purpose that was profound, real, full of conviction.

I often fantasize that if I’d met Kitty Cone in 1977, I would have marched right in, claimed my identity as a person with a disability and taken my place in history. But the truth is, I’m not sure I would have been ready.

Yet Kitty made me a revolutionary. Rather than awaken a future me, our talks thirty-five years later put me in touch with that scared Cathy on the threshold and accept that college kid for who she was: someone poised for a new adventure where she’d live in a foreign culture among people who didn’t speak her language. I was about to occupy my own building back then, laying the groundwork for the activist I would become. The remarkable thing was that Kitty taught me this without our actually having spoken of it. She understood something about activism that never gets acknowledged: it is as much about extending tools to draw strength and integrity from a painful past as it is about charting the future.

To celebrate Kitty, the Longmore Institute has compiled a video from clips of our extensive interview with her for “Patient No More.” The video is captioned and audio-described.

https://youtu.be/759dirUhsKc

To learn more about “Patient No More” that will be at the Ed Roberts Campus above Ashby BART in Berkeley from July 26 - December 18, go here.

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Fighting Shame with History

Visitor — Tue, 02 Sep 2014 22:37:36 +0000

By: Katie Murphy

Getting ready to start a new semester is a bit different for me. Like everyone else, I have to buy my books and readjust to a less nocturnal schedule. But, as a disabled student, I have the added preparation of having to work through a lifetime of internalized ableism at the beginning of each semester. You see, at the start of each term, I have to meet with my professors and explain to them my accommodations. And no matter how awesome and with it my professors are, requesting accommodations makes me a wee bit anxious. Before I even walk into office hours, I have to go to battle with all the awful ideas about disability that I’ve been exposed to since birth.

I have to engage in a little mental boxing match with self-doubt: “Do I really even need those accommodations? I could get by without them, right? I did before.” And guilt: “I’m wasting my professor’s time. They’re going to hate me. I’m such an inconvenience.” And shame: “A good student and a stronger person wouldn’t need all this stuff. I guess I don’t deserve any praise I get from my family about going to grad school. I guess I’ll have to give my Uncle Jimmy back that sweet card he sent me when I graduated from Berkeley. Oh my god, where did I put that card? Where did I put that card?”

And I’m guessing a lot of other disabled students go through the same thing. (Minus the card from my Uncle Jimmy part.)

But we don’t have to. We really, really don’t have to.

And I think most of us know this. Intellectually, I know that accommodations are my right and I’m not getting some unfair advantage over everyone else. My accomplishments are my own, and I don’t need to torture myself by going without accommodations.

And yet...

Pure logic isn’t always the best tool for fighting feelings like self-doubt, guilt, or shame. Disabled people grow up learning to hate themselves, to hate their disability, because the world we live in hates disability for no logical reason. And sometimes the best way to fight that kind of illogic is with more illogic.

If I can’t completely get rid of that part of me that demands I feel bad for being a disabled student, I can at least trick it. “Hey ‘Part of Me That Demands I Feel Bad for Being a Disabled Student’! I don’t owe you any feel bads. Somebody else already felt bad on my behalf. My bill is paid. My debt is settled. You can stop leaving harassing voicemails.”

You see, in 1977, years before I was born, 150 disabled people occupied the old federal building in San Francisco to force the government to enact the first civil rights legislation for disabled people in US history. As I’ve learned going over interviews with some of the occupiers for the Longmore Institute's Patient No More exhibit, one of the major motivations for occupying the building was the right for people with disabilities to get an education. Some of the sit-in participants went to segregated schools—separate schools for disabled children. Some were lucky enough to go to one of the few universities that admitted disabled students. They all sat-in so I could go to school and have the accommodations I need.

Just think: For twenty-six days, around 150 disabled people lived in a single floor of an office building. Only a handful were aware that they would be occupying the building at all, let alone for a month, so most participants didn’t have any bedding or a change of clothes with them. Many participants required attendant care for eating, using the bathroom, or preventing pressure sores. All of that care had to be improvised inside the building with everyone helping wherever and whoever they could. Some protesters had medicines that needed refrigeration, so a makeshift fridge was created with a window air conditioner and a plastic sheet. When the phone lines were cut, they communicated with the outside world by signing to people picketing in front of the building. Their struggle was supported by the Black Panthers, who made the protesters (including Black Panther Bradly Lomax and his attendant Chuck Jackson) two hot meals a day. When a bomb threat was called in, they didn’t leave the building. The protesters were in such close quarters with such limited opportunities for personal hygiene that many of them got crabs.

Crabs.

On top of all that, the building was completely inaccessible. The protestors were fighting for the implementation of the Section 504 of the Rehabilitation Act of 1973, which made it illegal for entities receiving federal funding to discriminate on the basis of disability. Under Section 504, the very building the protestors were occupying would have to be made accessible to disabled people. Yet they stayed in this inaccessible building for nearly a month to demonstrate the need for disability rights legislation, showing the nation the strength of the disability community and its allies.

If you, like me, ever find yourself feeling guilty or ashamed about being a disabled student, doubting whether you really need or deserve accommodations, I encourage you to think back to the 504 protests. If you ever feel society tugging at you to “get by” without accommodations, “toughen up,” “suck it up,” “stick it out,” because “the whole world doesn’t cater to you,” remember that you are part of a community that has spent enough time living in an inaccessible world. If you feel tempted to do an ableist society’s work by torturing yourself for being disabled, remember that over a hundred protestors (and an infestation of crabs) stayed in a building for nearly a month without the comforts of home or any accommodations or accessible structures. Remember that all the discomfort and indignities they faced as protestors were so that you wouldn’t have to go through the same thing. You’re relieved of any duty to feel guilty or ashamed about being a disabled student.

At the same time, you’re not completely off the hook. Remember that you have a legacy to uphold—a legacy that was forged in part at the 504 protests. Remember to honor the qualities that made the 504 sit-in so successful and such a life-changing experience for those involved: community pride, collaboration, and commitment to education.

Remember that the 504 sit-in did not occur so that one disabled person could scale the social ladder while the rest of the disability community remained on the bottom rung. The 504 sit-in was an effort by the disability community for the disability community. Remember that when you next come across fellow students who might be eligible for accommodations but are unfamiliar with the disability services offered by your school. Remember that you have knowledge worth sharing about disability services when a friend discloses that they are struggling due to a disability or medical condition. Remember to honor the confidentiality of anyone who confides in you.

Remember the invaluable work performed by the Black Panthers, the Grey Panthers, the Butterfly Brigade, and the International Association of Machinists. Remember that their support, supplies, and expertise enabled the sit-in to last. Disabled students gained the right to an education in part because of the different social justice groups that collaborated with the protestors. Remember that when students aren’t getting a fair shake at an education for reasons other than disability. Remember the power of collaboration when you come across women facing isolation in STEM fields, working class students going into debt to afford textbooks, trans students being referred to by the wrong pronouns, or students of color having their names mispronounced or mocked. Remember that as someone who has benefitted from different groups coming together to support disability rights you have the responsibility to pay it forward and support the right to an education for everyone.

If you can do all that without getting crabs? That means you’re one step ahead of the 504 protestors.

Katie Murphy is a graduate student in Women and Gender Studies at San Francisco State University and student assistant at the Longmore Institute. She also runs Space Crip, a blog about disability in sci-fi/fantasy.

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Disabled People's Forgotten Revolution

Visitor — Thu, 10 Apr 2014 16:23:52 +0000

The 504 protest in San Francisco - outside the building. Photograph by Anthony Tusler.

By: Catherine Kudlick

As the nation prepares to commemorate the 25th anniversary of the Americans with Disabilities Act (ADA) in 2015, the Paul K. Longmore Institute will celebrate the unique Bay Area contributions to disability rights. Our ambitious exhibit “Patient No More!” will focus on what is known as "the 504 occupation" in 1977 when more than one hundred brave women and men paved the way for so many of us and passing the ADA thirteen years later. We must return to thinking of the Americans with Disabilities Act as the product of grassroots activism and disabled people’s political savvy rather than a mandate somehow passed down from on high. To quote Paul Longmore’s speech at the 20th ADA Anniversary celebration in San Francisco, “We are the ones who did this. This wasn’t handed to us. This wasn’t an act of charity. This wasn’t something done paternalistically. We made it happen. We did it.”

The little-known story of the 504 protests is amazing. On April 5, 1977, dozens of disabled people from diverse racial and social backgrounds entered San Francisco's office of Health, Education, and Welfare for twenty-five days in what remains the longest occupation of a federal building in US history. They came on crutches, using canes, and in wheelchairs; some used American Sign Language, others augmented communication devices. Many others contributed simply by showing up to offer support. Most arrived with little more than the clothes on their backs, guided by a few vague ideas about why they were there. Yet enough of them had political smarts, experience with building coalitions, tenacity, and fire in their bellies to confront the government of a major world power about their civil rights, and win.

They had come because of Section 504 of the 1973 Rehabilitation Act. Buried in the law to accommodate returning Vietnam veterans was a provision based on the 1964 Civil Rights Act stipulating that individuals with disabilities “should not be denied the benefit of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” Cast in broad terms and bureaucratic language, Section 504 - which would serve as a model for the Americans with Disabilities Act thirteen years later - basically said that everything touched by the U.S. government needed to be fully accessible to people with disabilities: schools, universities, public offices, transit systems, hospitals. After over four years of government stalling that extended to the newly-elected allegedly pro-disability rights Carter administration, the regulations still awaited a final signature.

Infuriated, hundreds of protesters around the country occupied several federal buildings. Most were starved out within a day or two. But San Francisco was different. The organizers' incredible resourcefulness and months of cementing relationships with local community organizations resulted in an unlikely, dedicated coalition of supporters that included the Black Panthers, the gay community's Butterfly Brigade, labor unions, Glide Memorial Church, Safeway and McDonald’s, along with sympathetic local and national politicians. Thanks to food, showers, and other forms of help, the 504 occupiers held on for nearly a month, generating national attention and ultimately helping to gain the support necessary for signing the regulations.

The 504 Occupation would be a watershed personal and political moment, one that solidified the Bay Area’s key role in the struggle for disability rights. The Americans with Disabilities Act would not exist in its present form - or even at all - without the energy, people, and determination galvanized by this unparalleled historical moment. Thanks in no small part to the 504 sit-in, cross-disability thinking would be central to the ADA’s scope and reach and would shape the disability rights movement in general. The experience of spending more than three weeks in close proximity among people with a wide array of disabilities during what became simply known as “504” fostered an esprit de corps and coalitions that would have been unimaginable a few years earlier. When officials first cut the phone lines, Deaf people stood at the windows and used American Sign Language to convey messages between protesters inside and outside the building, while, blind people fed and toiletted quadriplegics. Friendships and romances formed. The experience of 504 helped create a sense of community grounded in successful activism that in turn gave people with disabilities a sense of their historical agency. Once people with disabilities had shown this prospect to the outside world and to themselves, they could continue to fight for expanding their civil rights. Indeed, a number of 504 participants would go on to help forge the ADA as well as key organizations such as Disability Rights Education & Defense Fund -DREDF (1979) and the World Institute on Disability – WID (1983) that promote disability rights.

And thanks to insisting that 504 be signed unchanged, language linking disability rights to civil rights would find its way into the law of the land. Section 504 states in part: “No otherwise qualified handicapped individual in the United States shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”

The Americans with Disabilities Act is far from perfect. But thanks in no small part to our brave sisters and brothers 37 years ago, at its core the ADA is more about rights than about charity. Let us not forget that this movement, like our nation and its other ongoing struggles for civil rights, was forged in revolution. By sharing this history, we hope to inspire? incite? future generations to continue this important work.

To learn more and to get involved, visit: http://longmoreinstitute.sfsu.edu/patientnomore

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Americans with Disabilities Act

Catherine Kudlick

disability rights

Paul K. Longmore Institute

San Francisco

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Can Pirates and Mermaids Be Crusaders for Disability Rights?

Visitor — Tue, 03 Dec 2013 00:36:24 +0000

It always happens. I’m introducing someone to the Longmore Institute’s mission to flip thinking about disabled people by challenging what everyone takes for granted. Invariably, there comes a moment when I know I need help that can only come from the high seas. So I pull out my Longmore Institute mascots, three plastic pirates that are about two inches tall and line them up on the table or pass them around the room. They’re dressed in bright colors, arms extended, ready to pounce. One has a rifle in one hand and a hook for the other hand; another one with an eye patch and wearing a waist-coat holds a spyglass in his non-hooked hand; a third, also with eye patch and hook, wields a sword. “What are these?” I ask.

Murmurs throughout the room until someone ventures to state the obvious, “Pirates?”

“Sure,” I say, “but aren’t they also disability action figures?”

Then it happens: I feel that indescribable catch, that moment I live for as a teacher, the collective intake of breath when you know you’ve gotten inside someone’s head. Some just sit there and hold the little guys, some shake their heads, some blurt out what I’m sure most people must be thinking, “whoa, I never thought of that!”

Suddenly everyone is full of questions:

“Why don’t we think of pirates as having disabilities?”

“But pirates are bad, do we really want to associate disabled people with crime and murder when existing impressions are already bad enough?”

“These are pirates of old: wasn’t everyone more or less disabled anyway back then?”

“Are there other examples like this?”

“What about mermaids?”

Indeed, what about the mermaids! Who knew to think of a graceful woman with a single fin instead of two legs as having a disability! I’m ecstatic because now the questions and curiosity have taken on a life of their own. In a split second something that always seemed obvious and self-evident has been turned upside down, and now everything might just be up for grabs.

But given all that needs to be done to improve the lives of people with disabilities, do pirates and mermaids really matter?

As director of the Longmore Institute, I wrestle with competing imperatives in the struggle for disability rights. On one side is the need to fight for a base line of accessible, affordable housing, quality healthcare, reliable, adequately-compensated attendant care, better education and higher graduation rates, improved job prospects and working conditions. On the other is the struggle to change hearts and minds, to offer the tools, the ideas, the stuff to combat internalized shame and the external prejudice and low expectations that constantly undercut people with disabilities in ways large and small.

Enter the pirates and the mermaids. Probably they won’t be much help with the base line, daily life stuff, frivolous, cute, not the real struggle. And yet….

Imagine the person growing up with a disability thinking not just about the Tiny Tims, but about a life full of risks, adventure, danger, and power. Imagine potential employers or employees who grew up thinking of mermaids as elegant swimmers able to go places where no one else can or of pirates as gutsy and resourceful. A generation of disabled people who carry around pirates and mermaids might help change not just hearts and minds but also the dismal employment statistics for people with disabilities. Journalists, editors, film-makers, novelists, publishers who have held a pirate as he transformed from adventurous renegade to disability action figure will be more likely to provide a wider variety of portraits and stories which in turn will influence healthcare providers, teachers, expecting parents, kids on the playground, aging baby boomers, returning vets, and most likely others. Politicians, CEOs, policy wonks, judges, and anyone who has encountered images of disabled people outside the tired old stereotypes will be more likely to introduce and support legislation, allot funds, and champion initiatives that benefit the lives of disabled people.

A stronger case needs to be made for the essential role culture plays in improving the lives of people with disabilities. Too often our society views small things like pirates and mermaids as insignificant or luxurious, when in fact they represent a key, often unguarded, entry point into changing attitudes that pave the way for the big stuff like employment, housing, and better services. Consider the recent excitement over creating toys that will inspire girls to become engineers. Here’s to a future where kids with disabilities dream up new ideas, including lady pirates, gentleman mermaids, and many other colors in the adventure rainbow.

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social construction theory

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